If you asked John he would tell you that I rarely mention my pain problems and that I just get on with it. In fact, he would tell you that I do more than I ought to and neglect to take into consideration my limitations more often than I ought.
It is not easy for me to write what I’m about to write but it has got to the point that it is really started to bother me.
I am not really talking about people who do not know me I am talking about friends. People that I care about.
I think that mostly they have absolutely no idea at all what living with 24/7 pain is really like. Do they think that because I’m smiling I am not hurting? Do they think I just have a sore knee? Or maybe a toothache? Or that my muscles are sore after a workout at the gym? All that my legs hurt because I’ve been on them all day? I really have no idea what they think and whilst I do not need or want to be treated as a totally helpless person, I would appreciate some understanding.
Imagine if you can what it might be like to NEVER be comfortable. Not even with painkillers. No, not even morphine works 100%. The only thing that does work is a drug that knocks you out cold and of course one cannot take such drugs without causing more problems. Anyway, back to my point. I am never ever free of pain. If I say I am having a good day it means that my pain is less than usual and if I am having a bad day then the pain is much more than usual. I never get any time off. I never have a good night’s sleep. In order for me to change position I have to wake up and struggle myself into a different position. I am rarely sleep for more than two hours at a time. A good night’s sleep for me is four hours without waking up.I also have to get out of bed a minimum of twice every night and that in itself is a pain to say the least!
I feel the need to point this out because it seems to me that people expect that I am always polite and calm in my emotions. No one seems to give me any leeway at all if I speak out of turn or if I get offended for no apparent reason or if I over react to a minor slight or even to a non-existent slight.
I am not asking any of you to feel sorry for me that is the last thing that I want. I am asking that you try and bear in mind that I may not look ill to you that I am and it takes its emotional toll upon me. This last week has been particularly hard on me with the flu as well and a new-born litter. YOU may be able to take all this in your stride but the toll it takes upon me is heavy and the way it shows is that I become overemotional and touchy. So please do not judge me harshly for those times when I am not all sweetness and light.
My friends are very important to me and I respect and love them and I always give benefit of the doubt to them and to others. I only ask that you do the same for me.
Thank you for reading.
11 comments:
I might save this post for ten years down the line when I may need it...
What you need is another analogy like the spoons... but it's like when they try to tell you about the pain of giving birth... you have to experience it to know it.
I don't suffer the pains you do.. and hope never to but I do notice that post a dose of codeine.. so I imagine morphine is worse... that I get very short tempered and snappy the next day. Moreso if I have to take it for two days in a row... take care and try to get some rest with this flu thing.
me again! speaking from being a woman... (you know the crankies once a month, like all women).. who admit it anyway!....
anyway... some people understand and know why we are short or emotional and some have no idea.. either way, it always helps to watch yourself and say a "sorry didn't mean to... personal problems or pms" straight after the fact.
Everybody has "their days", as everyone has some sort of problem to bear ( even the eternally happy facade people like me!).
So, we understand when told, but forget when on the otherside of it without explanation :)
HAH! I talk too much!
hi, I am now reading your blog forrmore than one year, the way you have described lots of things - it was a fact to me that you must be in pain a lot and I thought many times, oh boy, where does this guy take the energy from.. going to to the pool for a swim, taking care of the wowwos, going to shows with them and on top, dyeing fantastic wool, not to forget the knitting....
I am not always commenting but almost reading all your post.
To me, I am talking about myself now ok, it was or is very normal that you sometimes are touchy because I think, its only human and its nothing bad at all. I take people the way they are not the way the majority of people think, they should be or act... When I read that you have a not so good day, I think, hopefully you will have a better one tomorrow... this putting every word on a silver tray and having to be scared that one might say something wrong is something I let people deal with who are insecure and live not in reality... the people, you mean something to,do understand that you can't laugh and smile and cry out loud - oh my god is this a 100% fantastic world - painkillers make one tired but you still have the energy to do all those things you do... end of the story... don't worry, people who care do understand and respect that you sometimes have difficult days and will not judge you for a word or two specially since we all have days where we would prefer to crawl into a mousehole..
have a good night and hopefully you can sleep more than 4 hours in one go... ciao ciao ciao Christa
Strange that you should write this. I do try to see the other person's point of view, or consider how they might be feeling before taking offense at anything they might have put. I must admit I didn't realise that the pain was always there for you, and by the sounds of it the sleeping must be a nightmare. Do you have one of those beds where you can raise the head or leg ends. They can be helpful for getting up out of bed, if you can raise the head end and then somehow swing your legs over the side to get up.
Beverley xx
Colin, I don't always comment on your posts but I do read them all. This one feels like you took the words out of my mouth. Because our illnesses are invisible to most people, they don't realize what we go through. I really relate to what you said about having a good day (pain little more manageableor a bad day (you don't want to know) and that it hurts always. Sometimes it's almost impossible to put on that smile. My husband knows by my mood when I am in pain, but no one else. Is it my fault because I don't let people know that even when I am in a good mood I am still in pain? Probably, I don't like to tell people about it, somehow it feels like I'm attention seeking or weak. I had a doctor who asked me how I was at a regular appointment and when I automatically replied "Fine", startled me and said "Don't lie to me, I can see your pain in your face." Wow. Sadly I don't have that doctor anymore and I guess I can't expect everyone to be that perceptive.
I do hope your flu is over soon and that you feel better soon.
Valerie
Just to play Devil's Advocate Colin - and before I do I want to say that to me you are an absolute Trojan in enduring your dreadful pain with such fortitude and insight, courage and tenacity - just as you 'hide' your agony, perhaps your friends 'hide' their sympathy. It is impossible to understand how you endure as you do - I know I am up the wall after only a few days and nights of my intermittent rheumatism - but I bark visciously at my partner if he attempts to mollycoddle me. If he doesn't it's because he knows I want to keep calm and carry on - not that he doesn't appreciate the strength it takes to do so. Sometimes he shows his friustration, but his anger is over his inability to help me, not anger at me. Fondest thoughts to you.
Dear Colin
I read your posts from time to time and think to myself...this guy is amazing. All the things you achieve in your day to day life despite your pain.... you are an inspiration to others or anyone who reads your blogs. Don't be hard on yourself and try not to be frustrated with others who don't get what you are going through.
I hope you feel better soon from the flu. XO
I'm sorry you're feeling so bad, Colin. The flu is enough to get to anybody, much less somebody with multiple chronic illnesses. Keep taking care of yourself. The sun will shine again, promise!
Oh, Colin, please regard this as a Big Hug and a sincere hope you are getting over the flu and that the babies are thriving!
I think this post should be "required reading" for anyone, be they friends, family, or health professionals, who associates with a person suffering chronic pain. It says almost everything. I could have written every word myself, down to the bit about waking up to turn over. I would add..."And if I say I'm tired, please don't tell me to go to bed early, or get a good night's sleep (I wish!); it's not that sort of tiredness, it is the grinding fatigue of never being free from pain, never being really comfortable".
Like you, I try to keep cheerful; maybe we should throw a real wobbly occasionally and indulge in a bit of weeping and wailing....that would show them!
All best wishes for having many more Good days than bad ones.
Wendy (in Spain).
As the saying goes - it takes one to know one - I know too well the phenomenon you speak of. I wish family and friends would take into consideration that when I'm off kilter I might be having a bad day. Instead I get brow beat about how others have bad days too and I just have to cheer up and bear it...I wonder how well they'd do with an hour in my shoes or in your boots. Probably hear a lot more wailing and gnashing of teeth!
When I was younger (much younger!), I suffered for many years with migraines. I had four children under the age of five, a husband, pets, and so on. The pain in my head would many times cause me to bang my head against a wall, much to the distress of my loved ones. But when asked what was wrong, I would reply "I have a headache" - and would get looks of incredulity - "just" a headache?
From those who never had experience with migraines it was a normal reaction, I suppose. Remembering the utter desperation these weekly bouts would bring on, I can only empathize with you, Colin, because my pain was only from one source.
The feeling of not being able to control one's own body is really very frightening and when one lives daily with this kind of frustration, it's practically a miracle that we have any sort of control over our "bitchiness"! And control it is, in some cases superhuman control, just to remain pleasant in the face of this pain that grinds us down.
Colin, you are an inspiration to me and I am sure to many, many others who are to a greater or lesser degree in the same boat as you.
Please do feel free to "lose it" whenever you need to - most of us do understand, and those that don't - maybe they will learn a bit of compassion.......
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